It's never gonna end....

I got a call from one of Dr. Frieden's fellows today. The Vascular Anomalies Clinic met today at UCSF and Dr. Hess (their radiologist) looked over Maxwell's MRI/MRA. He discovered Maxwell does have the brain abnormalities associated with PHACE Syndrome. He said his cerebellum is abnormal and the structure of his Pons didn't form properly. They said he is going to experience developemental delays. This also explaines his facial palsy. He is also experiancing diminished muscle tone, that is why he collapses at times because he doesn't have the muscle strength to hold himslf up. For some reason Kiaser didn't put Maxwell's MRI on the disk that they have as UCSF so we will get more info when they receive that. They would like him to also get a true hearing test done when he gets his throat scoped as well as a GI swallow test. So I guess now Maxwell has P-H-A-E of PHACE Syndrome. He has many more appointments coming up and I will keep you all posted as we get new and more info. For now here is some info on what the abnormalities in his brain may mean.

Cerebellum - The cerebellum integrates information from the vestibular system that indicates position and movement and uses this information to coordinate limb movements.

Pons - The pons contains nuclei that relay movement and position information from the cerebellum to the cortex. It also contains nuclei that are involved in breathing, taste and sleep

The cerebellum is folded into many lobes and lies above and behind the pons. It receives sensory input from the spinal cord, motor input from the cortex and basal ganglia and position information from the vestibular system. The cerebellum then integrates this information and influences outgoing motor pathways from the brain to coordinate movements. To demonstrate this, reach out and touch a point in front of you, such as the computer monitor -- your hand makes one smooth motion. If your cerebellum were damaged, that same motion would be very jerky as your cortex initiated a series of small muscle contractions to home in on the target point. The cerebellum may also be involved in language (fine muscle contractions of the lips and larynx), as well as other cognitive functions.


The cerebellum, located beneath the occipital lobe and posterior to the medulla and pons, is an important regulator of motor function. It connects to the brainstem by three paired bundles of nerve fibers called the superior, middle, and inferior cerebellar peduncles. Integrity of the cerebellum is necessary to perform smooth, accurate, coordinated movements; to maintain posture; and to learn and regulate complicated motor patterns. Damage to the cerebellum does not produce muscle paralysis or paresis (weakness), but rather a loss of muscle coordination called ataxia

The cerebellum is a relatively large portion of the brain located near the brain stem that is primarily responsible for motor movements, but may also play a role in speech, learning, emotions, and attention

I haven't wanted to post....

anything since there is nothing really new to post. Well I guess there is it's just not what I had hoped for. So friday we saw Dr. Frieden and she was very kind but we were expecting to see all of the specialty Dr's that day to get more info and that didn't happen. She bacisally told us that we are heading in the right direction and instructed us on anything else we weren't doing already. She would like us to get the following done on Maxwell.

-Scope of his throat by ENT to see if his airway is narrowing from the hemangioma in his throat. (this is in the process of being set up and the dr who is doing it said he can fix whatever if any problem there is while he is in there. Max will have to stay the night in the hospital after the procedure if that is the case)

-Talk to his nuero surgeon about his risk for stroke.

-have his opthomologist specificaly check his retnas

-have a hearing test that checks his brain waves instead of the one where he turns his head toward the speaker and toy.

Micah asked her can we hope for a normal life for him and she said sure you can but don't go bury your head in the sand and pretend there is nothing wrong She said some of her patients are in school now and doing good, they may be a little more clumsy than most (I guess from the lack of oxygen to the brain) but some of them are develpentaly disabled. We kind of have to wait and see what happens. In the meantime she doesn't want to see him in the Vascular Anomalies clinic but on the 12 of March she is going to speak to thier radiologist at UCSF to see what he thinks about Maxwells MRI/MRA since he has seen 70 of these PHACE kids. I guess looking at all we are doing now it does seem like we are moving in a forward motion with everything. I was just seriously finding it hard to not shut down after his appointment. That's a lie, I did shut down for about 20 minutes. It was then God spoke to me and said, Stephanie, he is not yours. He is MINE. You are puting your faith in all that you can do and all the Dr's can do. I want you to trust Me!!! He continues to shop me where my faith needs to be placed. And to be thankful for every part of this. It is through this where His glory is going to truly be revealed.

So my prayer now is that I would just be thankful for everything. Especially thankful for every malformed vessel in Maxwell's brain that was so delicatly fashioned by the Master for his eternal purpose because He IS good! Last night at church we sang this song. I have replaced a few words but this is what the Lord wants me to remember:

For I know that You are good

God I know that all you do is good

So I put his life in Your Hands

he's Yours alone

he's Yours alone

Surrender, Lord I raise my hands to You alone

to You alone

So if you want to pray for our family please pray for continued thankfulness and peace. It seems easy at the moment when everything is a little calm but if something does happen I would like to keep the same attitude of thankfulness. So I guess that's all for now. I will post again when there is more info.

I really stink at updating

So I guess last time I updated Max was going to see the cardiologist. We got some great news in that department!!! His heart was totally normal!!!  So I am guessing Maxwell's offical diagnoses will be PHACE Syndrome but he only has the H-A-E parts. Also he is being reffered to the Dr. who coined the term PHACE syndome. She is the one who knows just about all there is to know about and how to treat this mess. We are hoping to see her by next week since Maxwell seems to be having some issues right now. So anyways I will try to do better about the posts. We are hoping and praying for some concret info and treatment for him very soon!

hearing appointment

So today we only had a hearing appointment for Maxwell and she said as far as they can tell he can hear out of both ears:) The only thing is we still don't know how one of the malformations in his ear is effecting him. I am gonna call the dr today to see what else they can do to find out why he is so fussy, vomiting, sleepy and crying all day long!!! Tomorrow is his cardiologist appointment at 1:30p.m. so PLEASE PLEASE pray!!! Thanks

Here is the picture slice of his brain. I don't know if you can see it but the dr is pointing to the jumble of arteries that is probably making him deaf on his right side. Next time I will get one if the arteries in his brain. It looks very interesting.

Maxwell update

So we had a narley week after my last post. EVERYONE in the house got a super bad stomach flu It was so bad!! Maxwell made a few trips to the hospital cause he was doing so terrible. Thankfully everyone is on the other side of it now!!!!! Man I felt like I was in the depths of hell these past few days! So anyways here is the update on Maxwell's appointments from yesterday.

Appointment #1 - Maxwell saw 2 dermatologist yesterday and they were very pleased with the way his hemangiomas looked. So pleased that she is probably not even gonna need to treat them at all!!! Praise the Lord for that one:) She also is in touch with a Dr at UCSF who actually named PHACE Syndrome. She is going to send all of Maxwell's info to her and see if she would like to join in on his case and maybe do a study on him. This was so great to here since one of the other PHACE mom's on my support group reffered her to us and I already tried to contact her. Praise the Lord, His hands are all in this. Maxwell's dermatologist is in contact with this Dr. everyday since they are good friends! So that was some good news!

Apppoinmtment #2- Maxwell saw the Nuero surgeon. He said Maxwell's brain looks good. He does have some fluid on the back of his brain but almost everyone does and that is fine. What is worring him is the tangeled mess of arteries that are everywhere. He doesn't know what to make of them and he said they are dangerous because if one of them ruptures he can have a stroke or die. So he is going to refer Maxwell to have an angiogram to get a better look at how his artieries and vessels are working. Some how (by the hand of God) he is getting blood to the right side of his brain even though his right coratid artery is a mess. He also said that there is a mess of viens that are most likly interfering with his hearing in his right ear. So he is going to have a hearing test done to see if he can even hear out of that ear.  So we are kind of in a holding pattern for that part, again.

Appointment #3- Maxwell saw the geneticist 3 to be exact. They said yes, Maxwell does have PHACE and that they can not really give us a good outlook on what his life is going to be like. This disease is so new to them that they have no road map to follow. So we kind of just need to have him followed very closely(which we are doing) to try and catch anything that is going on. They tried very hard to connect all of the different problems we have had with ourselves and our children and they really couldn't make any connections. We just happen to be really lucky when it comes to bad luck:( I wish it was the other way around so that we could play the lotto!! Wouldn't that be nice. But I guess we could be rich but we would still have all these medical problems so what will that make a difference?? Well I guess it would help we wouldn't have to worry about how we were going to pay for all of these appointments and procedures:) Oh well, we do what we can.

So this thursday Maxwell has his echo which every doctor stressed that we have done soon. I will post with an update on how that goes afterwards. Please keep praying:)
P.S. Will someone please tell me how to edit these post for spelling. My spelling stinks and I can't find the spell check on here!!

More info...

Maxwell had his EEG today. His neurologist said it looked normal so we just have to keep watching him and that he may be having them but we didn't catch one today so we will see.

Monday we go back to Oakland to meet with the dermatologist, the neuro sergon, genetisis and the nuerologist. they will be able to give us a lot more info on each one of his problems. I am still trying to get him in sooner to see the cardiologist for his echo but as of right now he is set to see her a week from friday.

So please keep praying if you will. This is so stressful on our entire family. Thanks